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San Diego Chapter

Home / Connect / Local Chapters / San Diego Chapter

Welcome to the San Diego Chapter!

Thank you for visiting the San Diego Chapter of the FSHD Society which officially launched in May 2019. We are here to build a local community of patients, family and friends, and help them connect and advocate for themselves and each other. Our hope for the future is to find a cure – Until then, we hope to bring a greater awareness to the community, and to help improve the quality of life of all those affected.

Join us for the 2023 Walk & Roll to Cure FSHD

REGISTRATION IS OPEN!

Mark your calendar for Sunday, September 30th, 2023 for our Annual San Diego Walk & Roll to Cure FSHD at Harbor Island Park in San Diego, CA. Walk & Roll to Cure FSHD is an event that unites the FSHD community to raise awareness of FSHD and move us closer to our goal of disease-modifying treatments to families by 2025. Help us meet our fundraising goal of $50,000 this year and light the way to a cure!

Learn more about the 2023 Walk & Roll to Cure FSHD here!

Volunteer Spotlight: Amy Bekier

Hear from your local Chapter Director (and National Board Member!), Amy Bekier, about her journey with FSHD, how she got involved with the FSHD Society, and what she gets out of her work.

https://www.fshdsociety.org/wp-content/uploads/2021/05/amybekiar1.mp4
Volunteer Spotlight: Dana Simone-Kurtz

Next, meet your local Walk & Roll Coordinator, Dana Simone-Kurtz! She describes her relationship to the disease, her motivation, and advice for the newly diagnosed.

https://www.fshdsociety.org/wp-content/uploads/2021/05/dana2.mp4

Upcoming Events

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Today

September 2023

Thu 21
FSHD University Logo
Featured Featured Sep 21 @ 1:00 pm - 2:00 pm

FSHD University – Physical Therapy for Shoulder Issues in Kids

Zoom Web Conference , United States

1:00 PM ET | noon CT | 11:00 AM MT | 10:00 AM PT Maaike Pelsma Join Maaike Pelsma, a pediatric physical therapist, to learn about shoulder dyskinesia in children... Read More »

Sat 23
International Celebration with FSHD Radio
Featured Featured Sep 23 @ 9:00 am - 12:00 pm

International Walk & Roll Celebration with FSHD Radio

National Virtual Walk , United States

10:00 AM ET | 9:00 AM CT | 8:00 AM MT | 7:00 AM PT Tune in as FSHD Radio podcast host, Tim Hollenback, interviews Walkers and Rollers during our... Read More »

Sat 23
Featured Featured Sep 23 @ 10:00 am - 11:00 am Event Series Young Professionals

Young Professionals – Nutrition and FSHD

Zoom Virtual Meeting , United States

11:00 am ET | 10:00 am CT | 9:00 am MT | 8:00 am PT How does nutrition impact the symptoms and progression of FSHD? This week, the group will... Read More »

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Amy Bekier

AMY BEKIER

Chapter Director

Amy Bekier obtained an M.S. in Education from Queens College, NY and had a career as an insurance agent and Chartered Life Underwriter. When FSH muscular dystrophy began affecting her and her family her motto became, “I can no longer sit and cope but must get active and hope”. After relocating to San Diego she joined the FSHD Society as a national Board member and Chapter Leader.

Amy is a passionate award winning artist who enjoys painting with soft pastels and oil.  When she could no longer raise her right arm to paint, she taught herself to paint left handed. Until recently Amy played modified recreational golf and continues to be a member of the Bernardo Heights Country Club.

Stay Informed on Chapter Activities!

Join the world’s largest network of patients, families, clinicians, researchers, and friends advocating for FSH muscular dystrophy. Let us know you want to be a part of your local chapter and you'll never miss a meeting or event notice.

When you sign up you'll receive the latest word on clinical trials, information on how to live a better life, and about local events that will connect to our remarkable community. You will also have the option to join our patient contact registry.

If you want to know more about this and why it is so important, learn more HERE

Your personal information will be kept strictly confidential.

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General Mailing Address:

75 North Main Street, Suite 1073
Randolph, MA 02368 U.S.A.

Mail Donations to:

FSHD Society
P.O. Box 411617
Boston, MA 02241-1617

(781) 301-6060

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